Category: Advocacy

Just In Time for the School Year: A New Pediatric Pacing Guide

#MEAction is excited to share a new and much-needed resource just in time for back to school! We are so thankful to have our allies at Long Covid Families join us in developing the Pacing and Management Guide for Pediatric ME/CFS and Long COVID.  Access the New Pediatric Pacing Guide Our Pacing and Management Guide

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A laptop on a desk displaying the PDF of the NICE guideline for diagnosis and management of ME. There is a cup to the left and a pair of glasses and some folder to the right. White text in a red box reads ‘Update on Scottish implementation of the NICE Guideline’ and the ME Action Scotland logo is in the top left.

An update on the Scottish implementation of the NICE guideline

As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and management of ME. The first step in the process was a Scottish stakeholder review, carried out externally by consultant Blake Stevenson.  The report on the review was published in July and #MEAction Scotland supports its findings.

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Dept. of Labor hosts dialogue on Long COVID in the workplace

The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges Related to Long COVID.” The online dialogue is a text-based forum that will remain open for posting ideas and voting and commenting on those ideas until August 10th. In addition to people with Long COVID, #MEAction

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MEAction Logo and the words Volunteer Survey written over a red box and a red background.

New #MEAction Volunteer Survey

#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link will be available on #MEAction’s website until Friday, July 29th. We encourage everyone to thoughtfully consider each question, fill out their responses, and submit the survey by the due date. The survey consists of 12 questions

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Dept. of Labor Updates Information on ME/CFS for Workers, Employers

The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at its Job Accommodation Network website to align with the most current CDC guidance. This action will help workers and employers find accurate information on ME/CFS and combat stigma and improve workplace outcomes. At #MEAction’s recent meeting

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U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases

Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience any morbidity (suffering, impairment) from ME/CFS. They can’t die with ME/CFS. Nobody develops ME/CFS following an acute COVID-19 infection – despite all the evidence that

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We can’t believe it! Another $50k matching gift!

I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser. That means that everything you give will be matched dollar for dollar until we reach our goal of $200,000 (£159,490)! Donate Now Here are three ways you can help us maximize this matching gift: Donate  Start

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Email Doctor Unger about the Misinformation at CDC

People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited recommendations for Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). The invited speaker at May 13th’s CDC Stakeholder Engagement & Communication (SEC) Call presented this slide on ME/CFS management. Failing the #MillionsMissing yet again! Information

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